1Summer 2012

News and information for previously fit and healthy young people living with cardiac conditions

P2 Your news

P3 Up the Pace

P4 About myheart

Five years ago Adam Payne, a member of the City ofRochester Swimming and Lifeguard Club, had to give uplifesaving after being diagnosed with hypertrophic cardiomyopathy, a potentially fatal hereditary heart condition, when his uncle died suddenly at the age of 30.He was fitted with an ICD (implantable cardioverter defibrillator) in January of 2009.

Adam found out about CRY by reading a poster on thewall of his hospital which gave information. This was at atime when the only thing in his life was complete confusion. Adam’s mum contacted CRY for advice andthen CRY became a contact point for Adam’s questionsand further support. He wanted to share his experiencesin the hope that it may help someone else like him.

Adam was out of the water for about eight months beforehe began to join in training again at the pace of a rookie.However, under the close supervision of The LondonHeart Hospital, the club’s coach, Paul Paulding, andmembers of the Kent Branch, Adam began to compete and started winning again at club and countylevel - hoping to eventually reach his goal at NationalLevel. But, he still doubted himself and needed at timesto be told not to give up. Qualifying through each roundof the National Lifesaving Championships in 2011,although emotional, gave him the encouragement tocontinue as he recognised this might be his last chanceto compete at this level. Each check up at the hospitalrisked him being told he could never compete again.

Eventually, the weekend of the National LifesavingChampionships arrived and the competition began.Clear focus took over. Once the competition was finished

the results were announced. Adam had won the RopeThrow and the Dry Side Incident and was third in theAquatic Incident. Then it was the overall result.

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Newsletter Issue 7Summer 2012

Adam Payne - Men’s National Lifesaving Champion 2011

My mum and I raised £657 through holding a raffle.There were many prizes, some being generously donated by; West View Leisure Centre; Andrew WallbankLimited; Ocean Palace Chinese Restaurant, Blackpool;and friends and family. A special thanks goes to FleurBoutique, Penwortham, where Elise has gift wrapped

many prizes over the yearswhich make them standout. Billy Worswick won thefirst prize of £100Love2Shop Vouchers,which I presented.

I was also invited to the Preston District Scouts AGM toaccept two cheques for CRY. I was asked to say a fewwords about CRY and my own personal experience ofbeing diagnosed with a heart condition. The donation isfrom a collection from the St. George’s Day Parade inthe town centre, then at the Guild Hall, as CRY was the nominated charity.

Left to right: District Commissioner Judith Jamieson, DistrictChairman Joe Singleton JP, myself Chris Smith & CountyCommissioner Carl Hankinson.

I attended the myheart meeting feeling a little unsure,however, how more wrong could I have been. I met youngpeople who are going through what I am and understandmy condition. I met some great friends - it was more liketalking to your friends than a meeting - in a very relaxedenvironment, as well as it being very informative. I trulyfelt that it was all about me and not my heart condition.All I can say is if you are thinking of attending you are halfway there. Come in and talk with people the same agethat understand and are experiencing the same as you, itwill be worth it.

I decided to attend the myheart meeting, along with mysister who also has long QT 1, because I wanted to findout more about long QT as there doesn’t seem to bemuch knowledge or awareness of this condition. I alsowanted to meet other people with heart conditions andfind out their feelings and how they deal with theirconditions.

I found the myheart meeting very interesting and it made

my sister and I feel that we weren’t alone. It was lovelymeeting the other members and listening to their different experiences. We all got on very well and feltcomfortable to speak out and ask questions in front ofone another.

I would like to thank Karla Griffith and all the memberswho attended the Birmingham myheart meeting for notjudging us and making us feel welcome and comfortableabout telling our stories.

I decided to go to the myheart meeting after reading anarticle about the footballer Fabrice Muamba whichincluded information for the myheart website. As I hadexperienced a similar episode to Fabrice I contacted themyheart coordinator and found out they were holding ameeting locally. I was eager to go along as it had onlybeen a year since I had my defibrillator fitted and I reallywanted to find out that I am not the only person goingthrough abnormal heart rhythm problems. It was great tomeet other people who had, or were experiencing, similarproblems to me. I found the meeting really helpful andwould advise other people who have the same conditionto go - it could really benefit you.

2 Summer 2012 CCaarrddiiaacc RRiisskk iinn tthhee YYoouunngg

Your newsNorth of England meetingSarah Bond, Brugada syndrome

FundraisingChris Smith, Wolff Parkinson White

Midlands meetingJodie Pearson, long QT 1

Midlands meetingAdam Lovatt, ventricular tachycardia

Left to right: Lucy Challis, Sarah Bond and Joseph Tanner

Left to right: Emma Jackson, Hayley Homer, Jodie Pearson, Ema van Souwe, Matt Beard, Adam Lovatt and Neil Stevens

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‘Up the Pace’ is an annual education day held by BristolChildren’s Hospital for their patients with a pacemaker orICD, and their families. Patients ranging from a fewmonths old to 18 years old have the opportunity to attendworkshops covering areas such as resuscitation andheart rhythms, as well as listen to a talk given by a youngadult about their experience of growing up with a pacemaker or ICD. Different groups including charitiesand pacemaker/ICD companies are invited to holdstands so families can wander round taking leaflets andasking questions. Two of the myheart members, LauraLees and Rebekah Goddard, went along to represent CRY and answer any questions people hadabout the myheart group. This is Rebekah’s account ofthe day:

“It’s one thing dealing with your own heart condition, butnothing can prepare you for the worry that suddenly arises when you become a mother to a childwith this potentially life threatening condition. It’s onlynow that I can see what my own parents were worriedabout. So when CRY asked me to help out with the ‘Upthe Pace’ education day in Bristol, chatting to parentsand children who are currently going through what I,myself have gone through in the past, I was more thanhappy to oblige.

Both my youngest daughter, Jessica (aged 5 years old),and myself, have long QT syndrome. I have a pacemaker,and she has a ‘Reveal’ device implanted, which monitorsher heart, until she is old enough to receive a permanentpacemaker.

A good mix of people attended the day: babies, toddlers, youngsters and teens, and all with their familiesin tow. These families were so lucky, just having theopportunity to meet and chat to experts in their field, thecardiologists, the pacemaker and defibrillator manufacturers, as well as the various charities, whichoffer such incredible comfort, help and support to peoplewho desperately need it.

It was a great opportunity to be able to chat to several parents who were in similar positions to that ofmy family and me. I was able to share some of my ownexperiences, as well as lend an ear and listen to whateach of them has had to cope with. There are someincredible people out there, who are dealing with somuch on a daily basis, and just listening to how some ofthem were coping with their various situations was very

humbling. It was strange for me as I suddenly realisedthat I was able to relate to both the children/teens as wellas the parents, as I have walked in both shoes.

Those who did not want to talk were able to help themselves to leaflets, booklets, badges andbags - and by the end of the day they were almost allgone!

Being able to represent CRY at such a day was a greatexperience. If only they had had this kind of event available to my family when I was diagnosed… it wouldhave meant a lot less worrying! My only hope is that theycan repeat this event again and again, and hopefullyother hospitals all over the country will follow suit.

Looking around the venue, and seeing the amount ofpeople that such a day was helping, gave me a reallytremendous feeling of hope. Hope that they now knowthat help is out there and they can maybe rest a little easier at night in the knowledge that they are definitelynot alone.”

Read Rebekah’s story atwww.myheart.org.uk/rebekah-goddard

Up the PaceBristol ‘Up the Pace’ Education Day

CCaarrddiiaacc RRiisskk iinn tthhee YYoouunngg Summer 2012

Left to right: Laura Lees and Rebekah Goddard

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Cardiac Risk in the Young (CRY) Head office: Unit 7, Epsom Downs Metro Centre, Waterfield, Tadworth, Surrey KT20 5LR Tel: 01737 363222 Fax: 01737 363444 E-mail: cry@c-r-y.org.uk web: www.c-r-y.org.uk

Summer 2012

About

What we can do for youIt is estimated that 1 in 300 young people aged 35 andunder who undergo cardiac screening are found to have apotentially life-threatening cardiac condition that will requiretreatment. With an increasing number of young people nowbeing screened every year through CRY clinics and mobileunits, even more people are likely to need emotional supportand information to help them cope with their diagnosis.

myheart (previously the Surgery Supporters Network) wascreated to offer support to young people (and their families)who have been diagnosed with a heart condition, who arerecovering from cardiac surgery or perhaps living with apacemaker or ICD.

Members meet up to socialise, take part in groupcounselling and talk to an expert cardiologist in comfortable surroundings.

This is your newsletter. We need you to let us know about theissues that matter to you and what you want to see coveredin these pages.

We could, for example, have a Questions and Answers section to deal with important issues such as travellingadvice, getting back to sport, recovering from surgery, livingwith a pacemaker or ICD etc. Tell us what you think.

And, of course, we would like to include your own stories andphotos. Please send these to us, along with your commentsand feedback.

myheart meetings are for those young people who have hador may be undergoing cardiac surgery, or those who havebeen diagnosed with a cardiac condition who would just liketo link up with others with a similar experience to share.

If you would like to join myheart and receive meeting details,please email the myheart Coordinator, Karla Griffith, atmyheart@c-r-y.org.uk

Or check out the myheart facebook page.

www.myheart.org.uk

CRY’s myheart group will now be holding parents groupcounselling sessions. This is for parents whose previously fitand healthy child has suddenly been diagnosed with a dangerous heart condition. The afternoon sessions will befacilitated by an experienced counsellor who is very experienced in working with families affected by dangerousheart conditions. The sessions are free to attend and willgive the opportunity to meet other parents and discuss yourexperiences in an informal but supportive environment. Theparents group counselling sessions are held in Birmingham,Leeds and just outside London.

These sessions are independent of the myheart meetingsfor young people diagnosed with a heart condition. Parentscan attend regardless of whether their child attends themyheart meeting.

If you are interested in attending any of these events, orwould like more information, please contact Karla Griffith,the myheart Coordinator, on 01737 363222 ormyheart@c-r-y.org.uk.

How to get involved

“I was diagnosed with long QT and given apacemaker which has now become my bestfriend. I thought I’d never get used to it, butnow I wouldn’t ever consider not having it.It’s a good conversation starter!” Rebekah Goddard

Useful links...

We need your stories and news for futureeditions of the myheart Newsletter, please email to thenewsletter editor, Mair Shepherd, at mair@c-r-y.org.uk

Get in touch

The Surgery Supporters Network is now calledmyheart. This change of name reflects that support isavailable to any previously fit and healthy young person

(35 and under) who has suddenly been diagnosed with a heart condition. The change of name was

inspired by the CRY Philips testmyheart tour.

Parents of myheart group counselling